Glossary of lichen sclerosus-related terms

Glossary of Lichen Sclerosus Medical Terms

Adhesions: an adhesion is when a band of scar tissue forms between two parts of the body that are usually separate. In the context of lichen sclerosus, this can be when the labia minora and labia majora fuse/stick together by the band of scar tissue (aka labial adhesions). Folks with LS can have labial and clitoral adhesions, and adhesions can occur around the vaginal opening.

Adjunct therapy: This is another treatment you can add to your primary treatment plan to get more benefits and improvement. 

Agglutination: is a clumping together of different parts of the body. This is another term for resorption, where two parts of the body, such as the labia majora and labia minora, become one.

Anus: The anus is technically separate from the vulva, although it’s always included on diagrams of vulvas, and since you can have LS in the perianal area as well, we will quickly review it. The main function of the anus is to help you pass stool and have bowel movements. The nerves and muscles surrounding your anus signal when it is time to pass stool and allows you to hold it in until you can get to a toilet.

Anal lichen sclerosus: Anal lichen scleorsus (also known as perineal lichen sclerosus or anogenital lichen sclerosus) affects the skin of the anus and includes skin texture changes, a lightening of the skin, and can be accompanied by symptoms like pain and itch. Since there is a whole host of conditions that can cause these symptoms, it’s important to get an assessment and have an examination of the anal tissue to determine if it is truly LS or not.

Asymptomatic: A person who has no symptoms but has clinical signs. For example, they might have light, thick plaques on their vulva, but they have no pain or itch. 

Bartholin’s Cyst: While not associated with lichen sclerosus, the Bartholin’s glands can get obstructed, which causes fluid to build up in the gland, leading to a Bartholin’s cyst where the cyst swells and grows in size. If the fluid becomes infected, you may develop an abscess. Treatment depends on the size of the cyst and whether or not it is infected. If infective, they may need to drain the cyst, if not, often time home care is all that is required.

Bartholin’s Glands: The Bartholin glands are two pea-sized glands that sit between the vaginal opening. Their function is to secrete a mucus-like substance into the vagina and around the labia minora. This lubrication helps reduce friction, minimize discomfort with penetration, and act as a vulvar moisturizer. These glands are not affected by LS.

Baseline: Your baseline is your normal. For example, my vulva is normally pink in color; that’s my baseline/normal. As my LS progressed, that pink got lighter and lighter until it was off-white.

Benign: If something is benign it means it is non-cancerous and not dangerous or a threat to your life. For example, some folks may have a benign mole on their vulva; this mole is non-cancerous and is not a threat or danger to the person.

Bioidentical hormones: A marketing term used to describe hormones that are chemically identical to your own body’s hormones. Bioidentical hormones are no safer than FDA-approved hormones and may not be as safe because they are less studied than FDA-approved hormones.

Biologic: A drug made from living organisms or parts of living organisms designed to target a specific part of the immune system causing inflammation.

Biopsy: This is a medical procedure healthcare providers use to make a lichen sclerosus diagnosis. For lichen sclerosus, this is done via a punch biopsy, where the healthcare provider uses a small, handheld instrument to remove a small sample of the vulvar tissue to be analyzed in a lab by a pathologist.

Blood blister: This is a raised pocket of skin that looks like a red, purple, or black blister on the vulva. This is often a sign of lichen sclerosus.

Cancer: A disease caused by the abnormal, chaotic growth of cells in a part of the body. In the context of lichen sclerosus, when it goes untreated, it can progress to vulvar cancer.

Case report: This is a paper that describes an individual case, often in the form of a detailed story report.

Clitoris: a part of the vulva – the external genitalia – composed of erectile tissue with thousands of nerve endings that play a role in sexual arousal and orgasm. The clitoris can be seen from the outside and the inside. The outside is comprised of the clitoral glans – i.e., the tiny nub – and the clitoral prepuce – also known as the clitoral hood, which is skin that covers the clitoral glans, which, in healthy tissue, can be pulled back to expose the glans.

Clitoral Phimosis: This is when the clitoral prepuce (aka the hood) sticks to/adheres to the glans making it difficult or impossible to pull the hood back (aka retract). This can cause a decrease in clitoral sensitivity for some folks.

Colposcopy: A test done at your doctor's – usually a gynecologist or vulvar specialist – office to examine your cervix under a magnifying scope to determine the cause of an abnormal pap smear.

Comorbidity: When people have multiple conditions at the same time. For example, a common comorbidity seen with LS is Hashimoto’s. 

Compounding pharmacy: A compounding pharmacy creates customized medication for your specific healthcare needs.⁠ In contrast to a traditional retail pharmacy which contains commercially produced and one-size-fits-all medication, compounding pharmacies take a more individualized approach to medication. Pharmaceutical compounding is the science of creating tailor-made, individualized medications.⁠

Cure: Medical specialists consider a cancer or other illness cured if, following treatment, it can no longer be detected and remains undetected for a long time. 

Dermatology: A branch of medicine that studies, diagnoses, and treats various skin conditions. A dermatologist is a doctor working in dermatology.

Dermatosis/dermatoses: Conditions affecting the skin, hair, or nails. In the case of vulvar lichen sclerosus, it would be considered a vulvar dermatosis.

Dermatopathologist: A scientist who studies diseases in body tissues. In the context of lichen sclerosus, this is the person at the lab who would analyze your biopsy sample, and send their report (which sometimes includes a diagnosis) to the healthcare provider who did the biopsy. A dermatopathologist is a pathologist who has special training in skin conditions, like lichen sclerosus.

Diagnosis: The identification of a disease or condition, such as lichen sclerosus.

Dyspareunia: This refers to pain with sex. With lichen sclerosus, some folks experience pain with sex as a symptom of their LS.

Ecchymosis: a discoloration of the skin usually caused by bleeding underneath the skin. In the context of lichen sclerosus, this can look like bruising on the vulva.

Erosion: loss of the outer layer of skin causing an open wound. In severe cases of LS, sometimes erosions are present.

Estrogen: A set of hormones emitted by the ovaries. These hormones affect the menstrual cycle and sexual development.

Erythema: This occurs when there is extra blood in the area, which can cause the skin to look red. 

FDA: This stands for the United States Food and Drug Administration federal agency that is a part of the Department of Health and Human Services. Their role is to protect public health by studying and regulating human drugs (among other products).

Fissure: This is a painful crack in the skin. For lichen sclerosus, because the skin is thickened, it lacks the elasticity and mobility to stretch like healthy tissue, and it can crack and fissure when stretched past capacity.

Fourchette: Right below the vaginal opening, you have the fourchette. The fourchette is a fold of skin whose function is to stretch during vaginal intercourse and childbirth. This is an area that can tear during sexual activities or in general with LS.

Fusing: This is another, less medical term for adhesions, scarring, and phimosis. All these terms refer to scar tissue forming between two parts of the vulva that were separate, causing the two parts to stick together.

Gynecology: A branch of medicine that deals with the study, treatment, and diagnosis of conditions specific to people with a vagina and reproductive organs like ovaries, uterus, cervix, etc.. A gynecologist works in gynecology. 

Hyperpigmentation: Skin that gets darker than your baseline. This can be red, purple, blue, dark grey, etc., depending on your skin color.

Hypopigmentation: Skin that gets lighter than your baseline. This can be white, ivory, grey, ashy, etc., depending on your skin color.

Introitus/introital opening: This is the entrance/opening of the vagina. It’s not the vaginal canal itself, just the opening. Some folks experience pain around the introitus or a build-up of scar tissue that can narrow the opening.

Keratin pearl: A buildup of smegma – a mix of dead skin cells and natural skin oils – that accumulate and can get trapped between the hood of the clitoris and the glans clitoris. Sometimes it causes no pain; other times it can be very painful, like a grain of sand stuck in your eye.

Labia majora: These are a part of the vulva. The labia majora are the outer lips. They come in different colors, shapes, and sizes. They often have pubic hair, but not always.

Labia minora: These are part of the vulva. The labia minora are the inner lips. Sometimes they are bigger/lips than the outer lips, sometimes not. Like the labia majora, they come in all different shapes, colors, and sizes. They typically do not have pubic hair.

Lesion: A change in an area of the vulva skin that looks different from the surrounding skin. Lesions sometimes need to be swabbed or biopsied if they look suspicious or your doctor needs to confirm what is causing them.

Lichenification: This is a thickening of the skin and is a hallmark of lichen sclerosus. Lichen sclerosus patients have significantly thicker vulvar skin than non-LS patients. Even if you do not see the thick skin when looking at your vulva, the layers beneath the skin surface you can see have abnormal thickening.

Mons pubis: The part of the vulva that you can see if you stand in front of the mirror, naked, that makes a triangle shape between your hip bones/pelvis. They often have pubic hair.

Meta-analysis: This is a method that combines data from multiple studies and then uses statistical analysis to advance a single conclusion. This conclusion is considered stronger than the conclusion from an individual study because it is pulled from multiple studies.

Patch: A lesion greater than 1 cm that is not raised. Some folks with LS will have patches of skin that are thickened or have changed in color.

Pelvic floor: The pelvic floor is a group of muscles that create a hammock shape across the floor of the pelvis. They hold the pelvic organs, such as the bladder, urethra, intestines, and rectum, and are connected to the vagina and vulva.

Pelvic floor physiotherapist/physical therapist: These are healthcare providers who work to support and treat folks with pelvic floor-related issues such as pain with sex, urinary frequency, urinary incontinence, constipation, hemorrhoids, post-partum, and more.

Perineum: Below the fourchette, you have the perineum, which extends to the anus. Similar to the fourchette, the perineum functions to stretch to help with vaginal births. It also acts as a foundation to help support your pelvic floor muscles, which are shaped like a hammock and hold your bladder, colon, and reproductive organs in place. This area is also a bit of trouble area for many folks; people experience tearing and skin thickening in this area.

Petechiae: These are small, pinpoint-sized, red, purple, or brown spots caused by bleeding.

Placebo: A substance that has no therapeutic effect (i.e., it doesn’t help improve a medical condition), and is used as a control in the testing of new medications.

Placebo effect: A placebo effect is when a person’s physical or mental health appears to improve after taking a fake treatment (for example, taking a sugar pill instead of acetaminophen (Tylenol) and saying their headache feels better) because you think you are getting the real thing. 

Platelet-rich plasma: Also known as PRP, platelet-rich plasma uses your blood, which is then injected into the vulva to help speed up and improve healing.

Plaque: This is a raised lesion that is greater than 1 cm. These are often thickened and have lost pigmentation in the context of LS.

Primary treatment: This is the main treatment you are on, which is usually topical corticosteroids. Your primary treatment is usually the treatment that has the most evidence supporting its efficacy and safety. 

Pruritus: This is a symptom and is another word for itchiness.

Purpura: This is a sign of lichen sclerosus where small blood vessels leak blood under the skin. This may look like bruising that measures between 4-10 mm.

Randomized-control trial: A randomized control trial (aka RCT) is a form of scientific experiment that is very highly controlled to ensure that the results are as legitimate as possible. This is considered the highest form of scientific evidence in Western medicine. Participants in an RCT are randomized into two groups – the experimental group and the control group. The experimental group gets the real drug or intervention being tested and the control group gets a fake or placebo version. Results from the experimental group are compared against the control group to see if the treatment being studied works or not.

Remission: Clinical remission is when there are no active signs of lichen sclerosus present on the vulva; this is determined by your healthcare provider who follows your LS case.

Resorption: Resorption is when two parts of the vulva melt into each other and become one such that they are no longer two separate parts. E.g., when the labia minora becomes completely flush with the labia majora. 

Sclerosis: When the skin gets abnormally rigid, tough, and hard.

Signs: Signs are things you can see with your eyes. In the context of LS, signs are things like thickening of the vulvar skin, skin that looks like crinkly wax paper, bruising, a lightening of the skin, blood blisters, fissures, tears, etc. 

Smegma: A mixture of dead skin cells and naturally occurring oils from the genital skin.

Speculum: The speculum is a piece of gynecological equipment. It is used to open the cervix and complete a pap smear. Speculums come in different sizes; I often tell folks with vulvovaginal conditions to ask for the child-sized speculum, which is less painful and traumatic than the bigger sizes.

Superficial: Close to the surface of the vulvar tissue. In other words, the opposite of deep.

Symptoms: Symptoms are things that you can feel, such as itching or pain. Unlike a sign, you cannot see a symptom like itch, but you can feel it. 

Systemic: Systemic means full body. Systemic medications are drugs, often taken by mouth and swallowed) that affect the whole body, including the cardiovascular, respiratory, gastrointestinal, and nervous systems.

Systemic steroids: Steroids that you take by mouth, such as Prednisone. Systemic steroids are rarely prescribed for LS, although you may be prescribed this if you have a very severe case that is not responding to topical corticosteroids.

Systematic review: This is a paper that provides a comprehensive literature review in a certain area of research and then summarizes the main findings.

Topical: Something that is applied to the skin like a cream or ointment.

Topical calcineurin inhibitors: Topical calcineurin inhibitors (TCIs) work similarly to topical corticosteroids to calm the immune system and reduce inflammation and symptoms. They are usually considered second-line treatment for lichen sclerosus. Tacrolimus and Pimecrolimus are the most common TCIs to be prescribed for LS.

Topical corticosteroids: These are medications that are applied directly to the vulvar skin to help reduce inflammation, irritation, and symptoms. A common topical corticosteroid is Clobetasol, but several different types of topical corticosteroids are prescribed for lichen sclerosus.

Ulcer: A painful, open wound.

Urethral opening: The urethral is a tube-like structure that moves urine from the bladder to the outside. You cannot see the urethra from the outside; instead, you can just see the opening. It is located below the clitoris and above the vaginal opening within the vestibule. The urethral opening functions to allow you to urinate. While not common, sometimes the labia minora can fuse inward, over the urethral opening, causing difficulty with urination. If this happens, a surgical procedure is done to separate the fusing.

Vagina: This is a tube-like muscle that looks like a canal that starts at the vulva and extends to the cervix of the uterus. Lichen sclerosus typically doesn’t affect the vagina, although it can affect the opening of the vagina (the vaginal opening or the introitus/introital opening).

Vaginal opening: This is a less medical term for the introitus/introital opening and it refers to the entrance of the vagina, which sits at the bottom of the vestibule, below the urethral opening. This area can have pain, pain with sex, or scar tissue build-up causing tearing with insertion (e.g., of a tampon, speculum, dildo, penis, etc.). 

Vestibule: This is an area of the vulva that makes an oval-like shape below the clitoris and in between the labia minora. The vestibule contains the urethral opening and the vaginal opening. 

Vulva: The external genitalia including the mons pubis, clitoris, labia majora, labia minora, vestibule, urethral opening, vaginal opening, fourchette, and perineum. 

Vulvar cancer: Cancer that affects the vulva. In some cases where lichen sclerosus goes undiagnosed for years and is untreated, it can develop into vulvar cancer. This is diagnosed via vulvar biopsy.